Posture flexing

Throughout yesterday I spent some time, in between everything else to do a little research on Google, I honestly wish I had a medical degree and didn’t find medical reports so boring, but they are always the best place to find out the truth. I generally give all the patient sites a body swerve as they are all sugar coated and written in a fashion supposed not to worry people, in other words, a version of the truth so watered down that finding the truth, is almost impossible. What I found out about contracture is as bad as I thought it might be, but what I was really looking for was the symptoms that lead up to the full finale, more specifically if it start by coming and going, or if it is purely a gradual tightening, I couldn’t find it at all. Mind you with my having MS and spasms, it does change the picture just a bit, either way, it would be so nice if I could just have one thing that does directly what it says on the packet, rather than having to piece bits and pieces together from all over the place. Even though contracture is part of MS, the information about how they work together was limited as always, other than it was mentioned as a cause in almost every site, but without specific detail.

One of the articles I read was actually very interesting as it was something I had never thought of and if I haven’t, well I doubt if many others have either. One of the ways that contracture can occur is as I thought through limited use of a muscle, but what interested me was that included the time you are sleeping. We all dismiss sleeping as some magical part of our lives that isn’t relevant to anything other than how tired we are, according to what I read it is actually one of the things that can lead to contracture, especially for those who are bed bound. I may not be bed bound yet, but I do spend the majority of every day lying in bed. On the good side, I always lie on my back so my body isn’t curled up which allows our muscles to tighten into that very curled position. I saw a picture and read about people who are permanently in a foetal position and can no longer straighten out at all, if we are permanently in the same or similar positions, the final result can be totally permanent. I may not finally be curled up, but I am sure that I don’t want to be locked flat like a plank either, I know that is an extreme but it has put into my head the thought that I should at least try to change my position slightly, even if it is just when I first get into bed, I know I will land up straight out by the time I wake, but I can at the very least try, I can also change the angle of the mattress elevator more often as well, as that will force my body into a different position.

It set me thinking as I do like most disabled people spend nearly all their lives sitting or lying, I mentioned about six months ago that I thought the muscles in my calves were tightening as I don’t seem to be able to keep my heels on the floor when sitting, they start on the ground but slowly rise without my knowing it is happening. Well it’s still happening and that too is contracture and it isn’t as simple as exercising the muscles to stretch them again, it will help but apparently once it has started because we do it without conscious thought the time spent contracted out ways the time in its natural position. For my legs, splints would help, but with my diaphragm well there appears to be nothing that can be done, other than my trying to hold good posture and to take huge breaths every now and then to try and stretch the muscle as far as I can. Clearly, I can’t do that all day long and I definitely can’t when I am asleep. What I do realise now is just how important it is to try and change position frequently, we can’t stand up and dance, but for an example, we can stretch out our legs occasionally and not sit without our knees bent all the time. Not once since I became limited in my mobility has one single doctor, nurse, OT or physio pointed out the importance of staying flexible, if not mobile.

Over and over again I have come up against the same situation, they don’t tell you until it happens and then they say that it is reasonably common to my condition, well why didn’t they warn me! Becoming disabled is bad enough, becoming more and more disabled because no one bothered to tell you how it could be at least delayed, if not avoided, is quite simply cruel. I truly wish they would see that, rather than playing this stupid game of not worrying us about something that might or might not happen. I am sure that I am not the only person that feels this way, in fact, I know that I am not as I have had comments and tweets confirming my feelings are more widespread. It seems to be something that I had hoped went with the Victorians, this constant belief that since we aren’t medically trained, we just wouldn’t understand, well hello, we do when someone tells us about it! It reminds me of dealing with the people in my old IT department who treat me like an idiot until I proved to them that I knew as much and in some cases more about parts of the network than they did. That is fine with an IT department, but it is mental when it comes to the entire NHS!

 

Please read my blog from 2 years ago today – 4/10/12 – Safety Net 

It is over 30yrs since I started having symptoms of MS and I was dismissed by the doctors and family alike as making it up for some strange reason that I never worked out why I would have been. What stuns me more than anything I hear from others is that this type of treatment is still happening, and there…..

I ate well! I exercised! I became ill?

A second quite day is ahead if I can ever get Adam out of his bed, he is going out for the day as it is his Mums birthday, Adam and his sister and her girlfriend are all of on a cycling trip, an unusual way to spend your birthday but if it is what she want then it should be what she gets. I am a strong believer in that is what birthdays should be. I have already been through 3 time to tell him that he has to move but I am being ignored, well not totally there is a grunt from under the duvet which I am totally sure isn’t an awake grunt. If he would just get up he would see that it is actually a perfect day for their outing, the sun is shining in a beautiful clear sky, but it is cool with a light breeze.

Years ago I used to cycle a lot, it was my only transport other than my feet so when I was on my own I cycled. There was on problem that i found with a bike over just walking and that was because first I was forced to go by longer routes and second I couldn’t actually carry as much shopping. In reality it was always easier to walk, but I used it to go to work when I was on the day shift and also if I had forgotten something from the shops, well the nearest shop to the house, even for a pint of milk was 2 miles away. When I moved to Glasgow I got rid of my bike in the first week, it was totally useless, if you have ever tried cycling in a city, especially in the early 90’s when there were no cycle lanes and so on, you will understand why I ditched it.

I have often found it strange that so many people who actually exercised more than the average, are the ones who more often get ill. Walking and cycling were not my only exercise, again before I came to Glasgow I swam for at least an hour each day and when I did stop cycling and swimming I took up exercise at home, weights and so on and I also took up dancing for at least a couple of hours a day. The only thing I could say I did wrong was smoke, I had a healthy diet and drank either nothing or just one or so alcoholic drinks a week. I remember as well that when I joined the doctors about 15yrs ago, the practice I am still with, my cholesterol level was so low they repeated the test as they didn’t think it was right.

You only have to listen to the News or talk to any others that you meet on stays in or visits to hospital and you will hear similar stories, I find myself questioning more and more the point of staying fit and eating well. I have to say I have given up on both, I don’t eat a lot but I eat what I want, rather than what I should and I drink everyday, it boosts the meds at night without my feeling bad in the morning. My health is so bad and I know my prognosis, so I am going to enjoy what I have left, I can see no reason now, to do the right thing, as I did for most of my life. Ironically it was because I always felt ill, that pushed me into trying to be fit in the belief that if I ate well and exercised I would stop being ill all the time, my health just got worse.

I don’t know if there is any research into this or not but it seems as though there is a really high number of so called fit people, getting serious chronic illnesses, we might not have damaged hearts and be riddled with cancer, but we get other illnesses instead. I do feel a little conned, I did all the right things in the belief that I would have a longer healthier life, what I got is the opposite. I wouldn’t be surprised to find their is little if any research into the previous health of those with autoimmune illnesses prior to diagnosis, why? because of several things, one being the question I asked and pushed the Doctor for an answer to, that was how long did they think I had had this for. He had to admit the NHS had been getting it wrong for about 20yrs. No Doctor is going to want to admit that, I didn’t think of it at the time but I guess it could have been another one of those things that I could have sued them for, something I don’t think is right to do.

I suppose it is normal to want to know why, what went wrong and why me? Questions that I expect to never have the answer to and ones I am sure not to be alone in wanting answered. I don’t ever remember been asked questions about my physical fitness or what my diet was like. None of my history was asked for, nothing was investigated after the MRI and Lumber-puncture came back positive, as did every test they did over those three days, that was the end of any investigation ever done. I still get the feeling that doctors don’t want to talk about anything other than medications how I feel and how I am coping, don’t seem to have ever come into it. Am I alone in this or have you heard of, or gone through the same thing?